Q&A: Girl's brain death ignites difficult debate

Tuesday

Dec 31, 2013 at 10:28 PM

LISA LEFF and TERRY COLLINS, Associated Press

OAKLAND, Calif. — A California hospital and family are embroiled in a harrowing legal and medical fight that has reignited the debate about when machines keeping a severely brain-damaged person alive should be turned off.

Doctors, outside specialists and a judge have all agreed that 13-year-old Jahi McMath is brain dead. They consider that the same as being legally dead and want to remove the girl from the breathing machine that has kept her heart beating since Dec. 9.

Jahi's family has rejected the diagnosis and is fighting to keep her on the ventilator while they try to find doctors and a long-term facility willing to care for her.

Q: What happened to Jahi?

A: She underwent a tonsillectomy and tissue removal at Children's Hospital Oakland to treat sleep apnea. After she awoke from the operation, she started bleeding heavily from the nose and mouth and went into cardiac arrest, her family said. Doctors declared her brain dead three days later. The hospital is investigating the cause of the complications.

Q: Why does her family want to keep her on a ventilator?

A: Jahi's relatives are Christians who say their religious beliefs hold that as long as her heart is beating, the girl is still alive. They have asked a judge to keep her on the ventilator and provide breathing and feeding tubes that would allow her to be transferred to another facility.

Dr. Paul Byrne, a pediatrician who has questioned the definition of brain death, says in court documents that he visited Jahi's bedside and observed her responding to her grandmother's voice and touch with a squirming movement.

"In my opinion this signifies she is not dead," Byrne said. "She should receive treatment as she is alive just like everyone else with severe head injury. ... If she gets treatment, she will have a chance to recover brain function."

Byrne, who spent more than a decade as the director of neonatology at St. Charles Mercy Hospital in Ohio, said he has not conducted a full physical of Jahi because he is not licensed in California.

Q: Why does the hospital want to take her off the ventilator? Even if doctors say she will never recover, why won't they give in to the family's wishes?

A: Two doctors at Children's Hospital and an independent pediatric neurologist from Stanford University have concluded that because there is no neurological activity in Jahi's brain or brain stem, she is dead. The hospital said it cannot continue treating a dead person and is under no legal or ethical obligation to keep her heart beating artificially.

Hospital officials said that parents do not have a constitutional right to determine when to remove ventilation from a brain-dead patient and that a California law provides only for a reasonably brief period for a family to gather at a patient's bedside before ventilation can be removed.

"Sadly and tragically, Jahi McMath has already died," said Dr. David Magnus, a pediatrics professor and Chair of the Stanford Center for Biomedical Ethics.

Q: Is this case different from other high-profile cases in which families have gone to court over prolonging medical intervention?

A: The person whose name has become most associated with end-of-life legal fights in the U.S. is Terry Schiavo, a Florida woman who collapsed at her home when she was 26 years old. After her heart stopped and she suffered brain damage, Schiavo entered what doctors refer to as a "persistent vegetative state," or prolonged coma. Unlike Jahi, whose heart doctors say would stop beating if she were removed from the machines helping her breath because her brain stem is not functioning, Schiavo maintained signs of limited brain activity and was able to breathe without a ventilator. She died in 2005 after her husband won a protracted court fight with Schiavo's parents to have her feeding tube removed.

Also in the news is the case of Michael Schumacher, a Formula One champion who is in a medically induced coma after hitting his head on a rock while skiing in the French Alps. Doctors have said a brain scan showed small, "surprising" signs of improvement, but doctors have given no insight into his prognosis.

Q: Is there any scientific basis for the family's belief that the girl is responding to the family, is aware of her surroundings, or could recover?

A: No, according to Nancy Berlinger, a bioethicist with The Hastings Center, a nonpartisan research institute devoted to health and medical issues.

"One of the things very confusing about cases like this is that the patient looks alive, the heart is beating, the body has a normal color ... the body feels warm," Berlinger said. "What is going on now is the maintenance of function by mechanical means."

Children's Hospital spokesman Sam Singer said Jahi's family also could be mistaking the movements they say she has made to an involuntary muscle reflex sometimes seen in brain-dead patients that doctors call the "Lazarus effect."

Q: How long can a person who is brain dead survive?

A: It's hard to know because in most cases families agree to suspend mechanical means of support, but it's safe to assume that a ventilator will not keep a patient's heart beating indefinitely, according to J. Randall Curtis, a professor of medicine and an intensive-care unit doctor at the University of Washington. The brain stem, the part that controls breathing, is no longer functioning in a brain-dead person. Although a ventilator can keep the heart and lungs working for a while, the organs will eventually shut down without input from the brain, Curtis said. Ventilated patients also are at risk of infection, he said.

"People's hearts have continued beating for a month sometimes, with the ventilator, but no one has ever been documented to be brain dead and come back from it," Curtis said.

Q: What does the family want to happen to Jahi, and what are the obstacles?

A: The family wants to move Jahi to an alternative health care facility where she can be kept indefinitely on a ventilator. They say they are in discussions with New Beginnings Community Center in Medford, N.Y., and with an unnamed facility in Arizona.

New Beginnings, an outpatient clinic that provides physical therapy and counseling for people with traumatic brain injuries, has agreed to accept Jahi as a patient and to provide 24-hour nursing and respiration therapy care.

Children's Hospital has said it would facilitate the transfer by allowing an outside doctor to fit Jahi with breathing and feeding tubes, but only under certain conditions. The hospital says it needs to speak directly with a new facility to make sure officials there understand Jahi's status, to confirm there is a lawful medical transportation plan for moving the girl and to verify the coroner has approved the move.

Q: What happens next?

A: A California judge has given the family until Jan. 7 to work out an agreement with the hospital or to secure a federal court injunction or an extension from a state appeals court. If none of that happens by that date, the hospital would have authority to remove the ventilator.